Ethics and research by young people Mary Kellett

Introduction  Informed consent  Confidentiality and anonymity  Absence of harm  Deception and coercion  Storage and ownership of data  Roles and responsibilities

Levels of ‘consent’  Third party consent  Assent  Consent by proxy  ‘informal’ consent  ‘formal’ consent  Informed consent  Ongoing consent  Circle of consent

Confidentiality and anonymity  Confidentiality:  definition  exclusions  Anonymity  Definition  Blurred boundaries  How far can you go to ensure anonymity?  Respect for participants

Absence of harm  Participant wellbeing is paramount  physical  emotional  mental

Deception and coercion  What is deception in research terms?  tricking participants  not disclosing true research purpose  covert observation  What is coercion in research terms?  suggesting rewards/favours as inducements  threats of adverse consequences

Storage and ownership of data  Secure, locked storage  Who has access to the data?  Who owns the data?  Decisions about destroying data  Video data

Ethical roles and responsibilities Adult supporter  help child researchers arrive at ethical research questions  withdraw support from unethical projects  don’t make rash promises  help child researchers to keep projects feasible  ensuring wellbeing of child researcher  clear the way with gatekeepers  disclosure of abuse  support child researchers with secure data storage Child researcher  ethical research question  informed / ongoing consent  cause no harm or distress  no deception  disclosure of abuse  Secure data storage  Share findings with participants

Examples of questionable practice  Involving participants without their knowledge or consent  Coercing them to participate  Withholding information about the true nature of the research  Persuading participants to engage in acts which diminish their self esteem  Invading privacy  Exposing individuals to physical, mental or emotional stress  Withholding a benefit in order to prove a causal link in a comparison group  Lack of consideration and/or respect for participants